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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Smell

Dry Spell

Evelyn Herwitz · January 31, 2023 · Leave a Comment

Dealing with dry eyes in a Northeast winter is always a challenge. Even as ours has been milder, so far (knock on wood—or not, given that the planet is warming) there’s just no escape from dry heat indoors, regardless of source. Some solve this with a humidifier, but I’ve found them difficult to keep mold-free.

My solution for my Sjogren’s for the past year-and-half, in additions to Restasis® eye drops, has been scleral contact lenses. I’m very fortunate to live a ten-minute drive from a college that specializes in health sciences, including optometry, with an excellent dry eye clinic. Dr. S, who teaches the optometry students, is a fountain of creative solutions for my eye problems and has been my guide and cheerleader as I’ve learned how to wear the lenses.

So, when I showed up for my annual check-up last week, he and the third-year student who attended me were concerned that I’m once again struggling with my dry eyes, despite the scleral contacts. The issue this time is not allergies, as it was last spring, easily solved with antihistamine eye drops. Even with the lenses inserted, the part of my eye not covered by the lenses dries out too quickly, due to the dry air at home. I need to use saline drops frequently to keep them moistened, so I’ve taken to only wearing them a couple of times a week, when I am sure I can use the drops often. But when I go for a couple of days without wearing them, my eyes get gunked up and my vision, bleary. Not fun.

Dr. S listened carefully, and then came up with another brainstorm. He had samples of a new nasal spray that is designed to treat dry eyes, called Tyrvaya®. You read that right. A nasal spray for dry eyes. There’s a trick to spraying it—you have to aim it inside your nostril toward your ear. And definitely don’t inhale, because it really stings. But miraculously, after trying this for several days, I find that my eyes are producing more tears—enough, in fact, that I can go much longer wearing my contacts without the saline drops.

Fun fact, as part of this education: Even for those without dry eyes, we all blink less when staring at a computer screen. For me, this lack of blinking becomes a big issue, exacerbating my dryness. Dr. S had another ingenious solution: an app that reminds you to blink. So I’ve added the Blinks app to my iMac. Basically, it’s an image of an eye that pops up according to the schedule you set, and blinks, then disappears. I’ve just started experimenting with it, so I cannot yet assess, but I pass that along as an option.

I don’t yet know what Tyrvaya costs once the samples run out, and I’m betting it will involved more mishegas with insurance coverage. But so far, it seems well worth trying. Will keep you posted at a later date about my progress, Dear Reader. In the meantime, remember to blink!

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image:  Petri Heiskanen

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Filed Under: Body, Mind, Sight, Smell Tagged With: dry eyes, scleral contact lenses, Sjogren's syndrome

Open Wide

Evelyn Herwitz · January 10, 2023 · 8 Comments

It’s not easy to open my mouth all the way. Even as the stiffening of the skin on my face has eased significantly over the past 40 years (indeed, I have plenty of wrinkles to prove it), I cannot open wide at visits to the dentist or the doctor. My dentist and hygienist and periodontist are all well-versed in managing the complications of working on my teeth. Still, those visits are never easy.

But there’s another aspect to this issue that’s less obvious. And that involves food. In particular, food in restaurants. Most particularly, any kind of fancy sandwich.

Portions are so overdone in most eateries that a panini or vegiburger can be three inches thick or more. And I simply cannot open wide enough to eat it without making a huge mess. (Holding it in my hands is another matter—as in trying not to get sauce or condiments on my bandages, which can infect my ulcers.)

My compromise, on those occasions when I’m hungering for something hearty in sandwich form, is to eat it with a knife and fork. Which works, for the most part, but it’s not the same as tasting all the ingredients together. And manipulating those utensils through thick breads with my hands is no picnic, either.

One trick I’ve learned: It’s easier to eat a sandwich cut on the diagonal than as two rectangles. That way, I can take smaller bites to start and work my way to the center.

But probably the best solution to the restaurant sandwich dilemma: a good, old-fashioned grilled-cheese-and-tomato sandwich. On our trip in December to the Connecticut shore, I had the pleasure of rediscovering this favorite from childhood. Not too thick, not too sloppy (if I wrap it in a napkin as I eat), and so satisfying.

Have any of you with this same scleroderma issue found other good options? Please share!

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: Lefteris kallergis

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Filed Under: Body, Sight, Smell, Taste, Touch Tagged With: diet, managing chronic disease, resilience

Frazzled

Evelyn Herwitz · December 20, 2022 · 6 Comments

It’s that time of year when everyone is running around trying to finish up last-minute holiday shopping, fretting over holiday menus and meal prep, and stressing over holiday travel, all while Covid once again seems to be nipping at our heels. (PSA: Please get your Covid bivalent booster and flu shot ASAP if you haven’t already!)

Which is why I was grateful to just sit and finish the Times crossword while our Hanukkah candles burned Sunday night, the first night of the eight-day festival. It was peaceful and our home smelled delicious from the latkes Al was frying. And very good they were, too!

I still have a few small gift errands to run. I’ve also, in recent years, shifted from gifts to charitable donations for family members. I ask what they’d like me to support and then make a donation in their names. Everyone feels good, and there’s no risk of the gift being delayed or late, not fitting, or ending up on a shelf. And it’s easy to do.

Still, the frenzy can be contagious, which can be fun if you like all the stimulation. For my inner introvert, however, peaceful moments watching candles burn is more to my liking.

In the midst of all this, whatever your preferred holiday mode, it’s good to know that the Winter Solstice falls on this Wednesday, December 21. Which means that this Thursday, the days will start getting longer again. The difference may be infinitesimal, but in my mind, realizing we’re making the seasonal turn here in the Northern Hemisphere is always a huge.

And with that, I wish you, Dear Reader, a joyful holiday, whatever you celebrate. Let the light shine in.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

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Filed Under: Body, Mind, Sight, Smell, Taste Tagged With: body-mind balance, mindfulness, resilience, stress

By the Sea

Evelyn Herwitz · December 13, 2022 · Leave a Comment

Last Friday marked our 38th wedding anniversary, and instead of the usual dinner out (often a challenge around the holidays) or maybe a concert or a show, we decided to escape for the weekend. I love discovering new places to visit, and we both love the ocean, so this time we ventured to the Connecticut shore, to Niantic, a coastal village within the town of East Lyme.

There we discovered a lovely boardwalk (actually, it’s made of concrete) along the shoreline, a park on a bluff overlooking Niantic Bay, and some great restaurants. Niantic Bay links the Niantic River to Long Island Sound, which (I never realized) is an estuary, an essential ecosystem where fresh water mingles with salt water and tides, providing a significant habitat for a bounty of marine creatures and birds. Along the beach we found many scallop shells, native to the bay, and even some sea glass.

Our inn overlooked a marina, which was a plus for Al, who always loves to check out harbors when we’re by the sea. The view was particularly beautiful at night, under a huge full moon. And a big local attraction was the Book Barn, which houses thousands of used books in many, many nooks and crannies. In fact, when I read about Niantic while researching options, that store was the clincher for me. We spent several hours there browsing and, of course, left with more books to read. (Next time, we’ll remember to clear some shelves and bring books to sell to the store, another benefit.)

On Saturday night, we walked a few blocks from the inn to see the annual Niantic Light Parade, a hometown holiday festival of festooned fire engines, local dance troupes in twinkling costumes, the high school marching band, and more. Pure Americana. See the photo of Kermit the Frog, below, along with some other favorite views.

Here’s to more adventures with my dear Al, and many more happy anniversaries to come!

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

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Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: resilience, travel, vacation

Namaste

Evelyn Herwitz · November 29, 2022 · Leave a Comment

Staying in shape during the pandemic has been, shall we say, a challenge.

The nearby college gym, where I walked an indoor track and rode a stationary bike, shut down to non-students for months in 2020. Even when it reopened for members like me the following year, I didn’t want to risk Covid exposure. Same story for the studio where I took Pilates classes.

I tried some online classes, but that didn’t work. So, I fell back on my favorite form of free exercise, walking my half-hour route around our neighborhood. But, of course, cold weather and rain and ice presented plenty of excuses to cocoon inside.

Other than my daily morning and evening stretches, which have spared me from becoming totally inflexible, I have definitely lost muscle tone and strength. I’ve been somewhat better about taking my walks in good weather, but now that we’re entering winter here in New England, I’m having a harder time pushing myself out the door before it gets dark.

Given my recent diagnosis of Type II stress-induced pulmonary hypertension, however, something had to change. And so, after procrastinating and feeling more creaky as a result, I finally decided to sign up for an easy yoga class to build strength, flexibility, and stress-management skills.

The studio is 15 minutes from home in a lovely, historic carriage house near downtown. As soon as I walked into the space, with its soft lighting and lavender scent, I felt calmer. I introduced myself to the instructor and explained my limitations (can’t flex my wrists, limited range of motion, balance issues, stiff ankles and toes). She was welcoming and immediately helpful, setting me up with a thick yoga mat, knee pad, blanket, and blocks for support, and gave suggestions for how to modify some of the poses. Then, to my surprise, a friend showed up, so I had a buddy.

The hour passed quickly, and the pace was slow enough for my skill level. I’m pretty good at figuring out how to modify poses, although my muscles were definitely trembling with some of the balancing and downward-facing positions. But I made it through. And the most amazing thing—my back felt great afterward, a major bonus.

I returned last week with my younger daughter, who was visiting for the holiday weekend. She has more yoga experience than I do, and she really enjoyed the class, validating my assessment that the instructor is excellent and it’s the right level for me. And, it was great to be able to go together.

So, I’m going to do my best to continue. It feels good to be back in a studio setting with an expert instructor who really cares to help me succeed. It’s also great to realize that I’m not as out of shape as I thought. And finding a much-needed weekly oasis of calm? All the better.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: Zoltan Tasi

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Filed Under: Body, Mind, Sight, Smell, Touch Tagged With: body-mind balance, exercise, hands, managing chronic disease, mindfulness, resilience

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About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

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I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

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